Thursday, December 16, 2010

The Silent Treatment

Mac and Maui were made for each other.

Hey there friends! Yep, still here. Still happy. Still trying to fit it all into the day. Still falling short when it comes to maintaining our little journal of adventures here. Since Mac has become more mobile, leaving all of his tubes and troubles behind for now, we've been on the move. But today it's not about getting caught up on Halloween, or Thanksgiving, or an impromptu trip to see Mickey or Maui. I hope and plan and have committed to update over Christmas--really. But today, I need your help.

After three months of speech therapy, McKay has nothing to say. He's becoming increasingly frustrated with our communication routine (or lack thereof) and has starting hitting and biting to make his point. Not so fun.

I'm signing. I'm repeating words and short phrases at nauseum. We're watching all the language videos. Reading books. He's going to nursery where he can see and hear other kids speaking and singing. He'll start a special preschool program in January to augment his opportunities for interaction. Grandmas are on board. Aunts are on board. Babysitters are doing the same. The poor kid probably thinks you have to say everything five times to be heard. And yet, nothing.

This week our speech therapist has recommended we commit to a speech development program called The Hanen Program. Have any of you experienced this program? It's an extensive on campus education program about helping children communicate. Please say someone out there knows something about this! I need to know if this is something that will be worth our time. The time commitment is, well, a big commitment. Not so bad if I can take Mac with me after a day at the office and we get to focus on him for a few hours, but this program is just for parents. No Mac. Just mom. I can't love missing an entire night each week with my boys. I can't love that I won't be actually coaching him through the process, but sitting in a classroom discussing whether or not McKay is better or worse off than all of the other kids whose parents will be there too. Is that selfish? Am I being short sighted? Bad attitude? Seriously - tell me.

So here's the plea -have any of you experienced speech delays with your kids? Have any of you after taking a truly hard look at whether it's you that has enabled that delay and changing your ways, still been frustrated by your child's seeming disinterest in language, imitation, sign or anything that has to do with communication? What did you do?

Don't get me wrong. McKay plays, he dances, he follows some directions, he seems to understand most things we tell him, he loves, he kisses, he squeezes and problem solves. But he does not speak. He is 28 months old and has no words. And everyone seems to think that's a bad thing. A really bad thing.

Part of me wants to believe that it's okay. He'll make it up. He'll figure it out. But professionals who study this topic seem to be worried or puzzled or fascinated by it. And that gets me to worrying too.

So that's it tonight. Nothing particularly cheerful aside from the picture of Mr. Mac at his favorite fountain on our latest search for some sun. Just a mom who's been silent for a little too long searching for some answers for her son who seems perfectly content to enjoy the silence. Please, speak up. We're listening.

9 comments:

Maui Ocean Club is the best....my Scotty lived at the fountain too!! Looks like you guys had a blast. I wish I had any knowledge on the subject, but I don't. I can only give words of encouragement. You are amazing and have so much faith, we will keep you in our prayers. :) Hope you have a fabulous Holiday!!

As a mother of a speech delayed child I think I would take the classes. We have been doing speech, twice a week for over a year now with my preschooler and it has made huge (slow) but a huge difference. If it can help you know the best way to teach your son that is where you will get the most progress. Progress doesn't happen much in a short session with a therapist. I have struggled to find ways to know how to work with my son at home so I think the sacrifice of time to take the class will be well worth the investment.

HANAN is VERY worth your time. My son didn't utter a word at 18 months, barely even made sounds, severe oral aversions etc. We were given the opportunity to take the Hanan course. We weren't sure at first either if it would be worth our time and we had to find childcare since it was just for us but I want you to know it was TOTALLY worth it. We learned so much and the results were amazing. Our son went from frustrated and non-communcative, to using Signed English and a few words to a complete chatterbox. It is worth doing the course but you have to do the reading and follow their recommendations (nothing crazy).

My son is now 3 and is completely caught up with speech. Go for it, I think you'll be pleased.

And our program worked so that we had sessions every few weeks where the speech path saw our child and helped us apply what we've been learning and guide us (one on one). The group discussions aren't that bad....it's not comparing, it's sharing what you've tried and what's successful and where you are struggling with the application of the Hanon principles and support, lots of support.

I had a very similar experience as Wendy and I highly recommend the Hanen classes! At 18 months our daughter wasn't speaking or gesturing, and our birth to three program encouraged us to take the Hanen classes. We are now 10 months after the Hanen classes and our daughter has made HUGE improvements. She is almost completely "caught up" and recently scored only a couple of months behind in verbal communication. The Hanen techniques are easy to follow and I really found the classroom setting to be helpful. Good luck, it is a commitment but in my opinion totally worth it!

I wish I had experience with the Hanen program so I could answer your question more specifically but I can't say that I have ever heard of it. What I do know is that what helped my developmentally delayed brothers with speech and motor development the most was not the time they spent with therapists but what the therapists taught my parents, who in turn taught all of us. Our whole family then employed the techniques with them 24/7. If that relates at all to what Hanen does then I would assume it has the potential to be effective. Good luck with all of this. I can't wait to hear what you decide to do and how it works out.

My mom (Patti Knowlton) sent me the link to your post, hoping I could give a little insight... I have been an SLP for 5 years. I really like the Hanen program. Yes, it is intense, and yes, it is NOT cheap, but I think that you will find a lot of benefit in the program. The biggest keys are consistency in presentation and expectation. As a therapist, I tell the parents of my clients that being 100% consistent is the best thing to do; but I also tell them, as a parent, that I know that sometimes, it just isn't worth the fight. Sometimes, you give in. It's ok. Sometimes, you have to; it's the only way to stay (semi-)sane. As for your son's frustration and behavioral outbursts, they are totally linked to his lack of expressive communication skills. Have your therapist(s) talked about using Alternative/Augmentative Communication devices? They can be as simple as picture exchange cards or as complex as computers that provide spoken output. If he isn't making progress with the signing (or verbal speaking), maybe look into some AAC that will help him communicate and decrease his frustration. Ask my mom for my email address, and I would be glad to provide another perspective for you.

When my second child was almost three years old, I began to really worry because she wasn't speaking. Occassionally she would make a little grunt noise but there were no words. I knew there had to be something wrong because my oldest child, Joshua, had been babbling away since he was about 9 or 10 months old, but not Melissa. My doctor recommended a speech therapist, who found nothing wrong with Melissa. She recommended that I watch my childrens interactions with others and keep a journal for a week. What I saw absolutely amazed me. Everytime Melissa would want something she would grab Joshua and he would get whatever it was. If they were in the refrigerator, Joshua would say "do you want milk?" Do you want juice?" and she would grunt and nod her head as soon as he picked the right thing for her. She had no need to speak because she had her big brother. I had Joshua stop doing that for her and within two months, Melissa was speaking away and she hasn't stopped. In fact, she is now six months away from being a lawyer:-) I don't think you need a class to find out how to help your son. Heavenly Father is abundantly aware of your sweet little boy and when it is time for him to speak, he will:-) Just my opinion as the mom of 16:-)

Live. Laugh. Love.

About McKay

Mr. McKay is a miracle. He was diagnosed with a soup of congenital heart defects while still in utero including: double inlet left ventricle (DILV), Transposition of the Great Arteries (TGA), a large ASD which has now been modified to create a single atrium, pulmonary atresia, and dextrocardia. He has undergone a series of three open heart surgeries to reroute his plumbing into a flow more likely to meet his growing body's demand for oxygen. He is post BT Shunt (August 22, 2008) and post-Glenn (November 25, 2008), and most recently traveled cross country to have the Fontan procedure at the Children's Hospital of Philadelphia (July 9, 2010). Today, McKay is a growing near-three-year old challenged with developmental hurdles we are anxiously trying to help him overcome. McKay offers heart baby hope of the most robust proportions. This blog chronicles our adventures.